Re: Subtotal Colectomy

[Guest guest]

I am so sorry to hear that this surgery is probably in your future. I don't

have any info for you, but want you to know that you will be in my thoughts

as you make your decision.

Hugs,

laurie

> From: LILQT4U1984@...

> Reply-To:

> Date: Sun, 21 Nov 2004 08:26:51 EST

> To: tpnsupport , mito ,

>

> Subject: Subtotal Colectomy

>

> I may be facing a subtotal colectomy in the next couple months. I need some

> honest advice. I'm really anxious about having a major surgery with as weak as

> my body is and with the mito and those added risks,etc. My GI at Cleveland

> Clinic called this week and said that my tests (manometry, colonic

> transit,etc) were all showing that my colon just doesn't work. She said there

> is not

> anything left to try or do so she is referring me to a surgeon to explore my

> options. Part of me wants to just go ahead and alleviate the prob and have

> the

> surgery before I loose anymore weight and get weaker. I've not been

> successful

> in bulking up all because of the colon issues. If I ever gain any weight its

> just because I haven't had a BM. Then once I'm able to eliminate I loose

> anywhere from 1-3#'s. I just need some advice from those of you who have had

> this done or your children have. How bad was it? How long of a surgery?

> Recovery

> periods? Pain? I would have a resectioning done of the small bowel to rectum

> with no ostomy bag. I know there is a surgeon at CCF who performs this

> surgery laparoscopically and does the reconnection all at one time. I will be

> meeting with my Ped's surgeon at least first. I have alot of confidence in

> him

> and he is also very well known for his GI surgery. He may be able to do the

> same thing or have another good idea for me. Please Share!! Thanks!

>

>

>

[Guest guest]

,

I am so sorry to hear this surgery is most likely in your future. I

can't offer any advice or experience on this particular procedure,

but do understand the inability to gain except by retaining what no

one wants to keep! It sounds like you have great surgeons on your

team and that is very reassuring. It also sounds like the benefits

may well be worth the surgery. Thanks goodness there would be no

need for an ostomy bag. I have a good friend with FSH MD who has

gone through the ostomy stuff recently....very difficult adjustment

for her.

I do understand feeling anxious about the surgery, being so weak.

I was in very bad shape prior to jejunostomy. I remember being

wheeled down the hall to OR feeling very distraught inside, on the

verge of losing my composure, which is quite unusual for me. I have

always gone into surgeries feeling positive and matter of fact. But

I knew this was different because I was starting from a very

different place. And because the procedure was major surgery (not

the common punch-through method of tube placement), there were

significant complications and permanent problems as a result. I had

to have a 24-hour attendant for several months. It took a long time

to regain some strength. We really didn't know if I would ever get

back to the point of being able to care for myself during the day,

but I have. And the benefits really did make it worth it. The only

thing I would change, knowing what I know now, is to try the much

less tramatic punch-through placement. At the time my GI doctor was

dead-set against that method, but he also did not fully realize what

the major surgery would do to me.

Well, you asked for honesty. I hope this isn't TOO honest! You've

been through so much in the last few years and have exhibited such

maturity and grace. I can't imagine how I would have handled this

situation at your age. For sure we will keep you in our prayers.

Hugs,

Barbara

> I may be facing a subtotal colectomy in the next couple months. I

need some

> honest advice. I'm really anxious about having a major surgery

with as weak as

> my body is and with the mito and those added risks,etc. My GI at

Cleveland

> Clinic called this week and said that my tests (manometry, colonic

> transit,etc) were all showing that my colon just doesn't work.

She said there is not

> anything left to try or do so she is referring me to a surgeon to

explore my

> options. Part of me wants to just go ahead and alleviate the prob

and have the

> surgery before I loose anymore weight and get weaker. I've not

been successful

> in bulking up all because of the colon issues. If I ever gain any

weight its

> just because I haven't had a BM. Then once I'm able to eliminate

I loose

> anywhere from 1-3#'s. I just need some advice from those of you

who have had

> this done or your children have. How bad was it? How long of a

surgery? Recovery

> periods? Pain? I would have a resectioning done of the small

bowel to rectum

> with no ostomy bag. I know there is a surgeon at CCF who performs

this

> surgery laparoscopically and does the reconnection all at one

time. I will be

> meeting with my Ped's surgeon at least first. I have alot of

confidence in him

> and he is also very well known for his GI surgery. He may be able

to do the

> same thing or have another good idea for me. Please Share!!

Thanks!

>

>

>